Experiences of Rare Diseases: An Insight from Patients and Families

Experiences of Rare Diseases: An Insight from Patients and Families-Rare Disease UK

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Over the summer of 2010, Rare Disease UK conducted a survey of patients’ and families’ experiences of living with a rare disease. The aim was to identify and better understand common issues and problems faced by those living with a rare disease.

We received responses from 600 patients and families affected by over 100 different rare conditions. The survey dealt with experiences in a range of areas including research, diagnosis, and access to care, information, support and treatment.

Our report, 'Experiences of Rare Diseases: An Insight from Patients and Families', published in December 2010, reveals the results.

We use these findings to promote better awareness of rare disease issues among the public, policy makers and health professionals..Rare Disease UK

Read the Report Experiences of Rare Diseases: An Insight from Patients and Families

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DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.